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Introduction to the Workshop
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Abstracts

Mapping

Informatics

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Ethical, Legal, and Social Issues

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The electronic form of this document may be cited in the following style:
Human Genome Program, U.S. Department of Energy, DOE Human Genome Program Contractor-Grantee Workshop IV, 1994.

Abstracts scanned from text submitted for November 1994 DOE Human Genome Program Contractor-Grantee Workshop. Inaccuracies have not been corrected.

Social Science Studies of Privacy and Their Implications for Policy Choices in the Uses of Genetic Information

Alan F. Westin
Center for Social and Legal Research, Suite 414, Two University Plaza, Hackensack, N.J. 07601

This DOE-funded Project updates the theoretical and empirical study of privacy and of new-technology challenges to democratic privacy balances published by Westin in 1967 [1].

The project has collected and examined social science writings and studies since 1967 in light of Westin's generally accepted concepts of the four primary states or conditions of privacy (solitude, intimacy, anonymity, and reserve); four central functions of privacy in modern, democratic society (personal autonomy, emotional release, self-evaluation, and limited and protected communication); the balancing of privacy, disclosure, and surveillance as competing but necessary social values and processes; the impacts of physical, psychological, and data surveillance technologies on pre-1960's balances of privacy in social life and under legal rules; the key elements of a technology-assessment for privacy impacts; an analytic framework for contemporary balancing of privacy, disclosure, and surveillance interests; and a legal, political, and social program of privacy-protection measures.

The Principal Investigator (Westin) has been supported by an expert, inter-disciplinary Senior Advisory Committee (David Flaherty, Lance Hoffman, Neil Holtzman, Kenneth Laudon, Dorothy Nelkin, Kimberly Quaid, and Philip Reilly).

As a central resource, the Project has commissioned reviews of the social science literature relating to privacy since 1967 in anthropology, sociology, political science, economics, psychology and psychiatry, jurisprudence, and empirical legal studies. The reviewers were Colin Bennett, Gail Geller, William Regenold, and Carol Traver. Their drafts were critiqued by the PI and Senior Advisors; read by outside experts in the fields; and are now in final rewrites.

In addition, a comprehensive review of public and leader opinion surveys on privacy since 1967 was conducted and written up by the PI and two research assistants.

Using the original Westin framework and the social science studies since 1967, the Project is preparing a monograph presenting a Privacy-Impact Assessment of the new scientific discoveries and applications emerging from the Human Genome Project (HGP). This assessment describes the uses of genetic science and genetic concepts (and their societal impacts) in the 19th and 20th centuries, prior to the discovery of DNA; the period from DNA discovery to the HGP; and the past decade of activity spurred by the HGP and applications of its findings.

The assessment then lays out the interest groups and competing positions relating to uses of genetic information, genetic testing, and genetic data banks for both medical and social uses of genetic data; compares the ideas and the emerging politics of genetic-information applications to the treatment of information-technology applications (computers and telecommunications) between the mid-1960's and the present; examines the application of fair information practices or privacy-protection standards to the genetic-information field; provides a near and long term forecast of likely applications and uses of genetic information in the U.S.; and poses a series of policy choices relating to privacy and genetic information, with a discussion of their implications.

The Project will produce three products: an "assessment" monograph on privacy and the uses of genetic information; an edited volume containing each of the four social science review papers and the survey-research review; and a definitive bibliography of social science works on privacy.

[1] Privacy and Freedom (New York: Atheneum,1967)